Three-month-old Easton Friedel, of Weedsport, suffers from epidermolysis bullosa, a rare genetic skin condition that causes painful blistering and often leads to deadly infections. He has a scab on his face from one of his blisters in this family photo taken at Cincinnati Children's Hospital. Easton's family is thankful that he is scheduled to come home Friday. Submitted photo

Syracuse, N.Y. -- On Saturday, relatives of Easton Friedel, the Weedsport baby suffering from a rare and potentially deadly skin condition, announced on Facebook that he was coming home Friday.

The outpouring was immediate: Two thousand people commented, 800 shared the Facebook status and more than 19,500 liked it.

They have prayed for Easton when it seemed like he might not live. Rejoiced for him when he beat the odds. People who’ve never met him or his family check on his status the last thing at night and first thing in the morning. And, perhaps most of all, they have helped his family at every turn in a way that’s been nothing short of astonishing.

When Easton was born Aug. 23 at Auburn Memorial Hospital, he was screaming in pain and the skin was missing from his arms and legs. He was diagnosed with epidermolysis bullosa, a rare genetic skin condition that causes painful blistering that often leads to deadly infections. Easton was at Crouse Hospital for a few days after his birth but has been at Cincinnati Children’s Hospital for most of his life.

Danielle Friedel, Easton’s mother, and his grandmother, Joann Friedel, have been with him almost every day. Friedel’s husband, Jared, and some other family members have been in Cincinnati for some of that time, too. Danielle Friedel has no idea how they would have been able to do that without the help that showed up almost immediately and has been there day and night.

“I can’t imagine,” said Friedel, 26. She and Jared, 27, have three other boys ranging in age from 3 to 8. She cleaned houses before Easton was born and Jared works at the Clear Edge Filtration factory in Skaneateles Falls.

When Easton’s cousin put the baby’s story on Facebook and Indiegogo.com in the days after he was born, she dropped a pebble that made a thousand ripples faster than anyone imagined. Mouseclicks and Facebook “shares” sent his story around the world.

Childers, Jared Friedel’s cousin, woke up Aug. 23 expecting to see a picture of a healthy baby on her phone. What she saw was Easton, missing the skin on his arms and legs. Childers, who lives in Alabama with five children under the age of 8, wanted to do something to help.

“I would hope if this was one of my babies, someone would help me,” Childers said.

She remembered donating to another family’s fundraiser on Indiegogo so she set up an Indiegogo fundraiser for Easton a few days after his birth. The goal was to raise $5,000 in a month. They hit that number before she went to bed that night.

When the online fundraiser closed Sept. 23, the total donated was $181,003. Donations continue to come in to help the family — Childers estimates the total is more than $200,000 at this point from more than 4,000 people.

Jared Friedel, the father of 3-month-old Easton, stands in Easton's room in their Weedsport home. A photo of Easton hangs on the wall on the left. Easton's siblings, left to right, Blake 3, Carter, 5, and Logan, 7, are shown in a photo hanging on the right. Michelle Gabel/The Post-Standard

There have been donations from every state in the country, and others from overseas, including England, Norway and Australia, Childers said. There have been local fundraisers, bake sales, online sales. Every lunch and dinner Danielle Friedel and her mother-in-law have eaten has been donated and delivered through a schedule set up on a website called “Take them a Meal.”

Patient AirLift Services, a national organization that arranges and donates free flights to patients and their families, is flying Easton, his mother and grandmother home on Friday. They’ve donated other flights to the family, as well.

Childers said she gets hundreds of private emails and messages on Facebook every day from people who want to help. The Facebook page and the Indiegogo page feature pictures that are graphic. They often show Easton’s raw sores and his face wrinkled with pain. They are hard to look at, but even harder to turn away from.

When Jimmy Pannullo saw that a friend had posted messages on Easton’s page, he clicked over to see what it was all about.

“I didn’t know who the parents were. I just saw the baby,” said Pannullo, a Long Island contractor who has a three-year-old son. “I put a post up: I don’t know where you live or how far away you are or what you even need, but I would do Easton’s room for him so he can have a nice room to come home to.”

He received a note from one of Easton’s aunts, thanking him for the offer but telling him that they were going to go with the contractor who made the lowest bid. He clarified his offer: he meant he’d do the work for free.

Pannullo has redone the Friedel home’s three bedrooms, put in some new floors and bought new furniture. (The family wants to keep the details a surprise for Danielle Friedel when she comes home.) Pannullo has raised $8,000 for the efforts, but has donated much more. He wouldn’t say how much it cost.

Pannullo said he tries to help out a different family each year by doing some free work. This year’s project became much more than he expected. The three Friedel boys — Logan, Carter and Blake — call him “Uncle Jimmy” now.

When Easton’s story reached the children at St. Mary’s Academy, a Catholic school in Baldwinsville, they decided to postpone their hope of a playground a little while longer. Right now, the kids have blacktop, a basketball hoop, some grass and a box of toys. They need to raise $31,000 for their playground.

St. Mary's Academy children have raised more than $1,000 for Easton Friedel and his family. Because Easton's skin condition makes his skin as fragile as a butterfly, the students decided to sell paper butterflies for $1 each. All the money they collected will go to Easton's family. In the front row, from left, are: Megan Virkler, Justin O'Connor, Emily Giocondo and Lily Janowski. In the back row are Evan Barker and MaryLou Nicolucci.
Submitted photo

“We knew it was such a better cause to raise money for this little boy,” said Megan Virkler, 10. She called all of her relatives, went to her friends and family and told them Easton’s story. She also made dozens of cupcakes and decorated them for her mother to sell at her office.

The 120 kids at the school raised $1,150. They put up butterflies in the halls for each donation. Butterflies are the symbol for EB because sufferers’ skin is as delicate as a butterfly’s wings. The kids later sent all the butterflies to Easton’s family.

On Monday, the school announced that Easton was coming home over its public address system.

“Everyone was screaming and clapping,” Virkler said. “I was just really happy that we could make a difference for him and his family.”

Easton’s family has used the power of its Facebook page to help other sufferers of the same disease. Relatives put up stories about others with EB on Easton’s Facebook page, asking for prayers and donations, if possible. The special bandages needed to wrap the blistered spots can cost families thousands of dollars a month, depending on their insurance.

The Friedels helped raised money for children across the country and in Central New York, including Molly Gibbons, an 11-year-old in Jamesville with the disease. Molly’s family’s insurance recently changed, leaving them to cover the bulk of the bandage costs, according to the Gibbons family’s fundraiser page on Indiegogo. People have donated more than $5,000.

Chloe Lee Jones lost her fight with EB March 24. The inside of her intestines blistered and she couldn’t eat any more, according to her mother’s blog. Chloe was a little more than 3 months old. Her parents, who are in Kentucky, couldn’t afford a tombstone.

Childers posted a link to the Jones family’s story on Easton’s Facebook page and the Facebook page for her business, Amy Childers Photography, asking people to help raise $2,000 to put something other than a metal sign at Chloe’s grave. They did in just days.

“When I found out about all the donations that were raised, I cried! I was so happy,” wrote Chloe’s mom, Megan Jones, on her blog.

Danielle Friedel said Easton’s prognosis is unclear right now. With the kind of EB that he has, infections in infancy are the biggest risk. Easton had a blood infection in September that spread to his heart and threatened to take his life.

Danielle Friedel holds her baby, Easton, at the Cincinnati Children's Hospital, where the three-month-old boy has been a patient most of his life.
Submitted photo

Danielle Friedel called the rest of the family to come see him and had him baptized. Easton pulled through.

Danielle Friedel will be providing much of Easton’s care when he gets home. Earlier this week, she was watching a video on how to perform CPR while at the hospital in Cincinnati. She lists Easton’s medications and other needs as if she’s a nurse: He gets oxycodone and methadone for pain, Ativan for anxiety. He’s fed through a tube in his stomach. He’s on oxygen.

But the important thing is he’ll be home, Friedel said.

Every night for months, Easton’s brothers have sung him to sleep through a computer screen as they video chat with their mom. On Friday, they’ll be able to sing “Twinkle, Twinkle Little Star” and “Rock-a-Bye Baby” right next to him.

Here’s how the public can help Easton Friedel:
- Send checks made out to Lori Bodoh to 6499 Beechtree Road, Auburn, NY 13021. Put “Easton” in the memo.
- Donate gift cards to the family for Christmas by mailing them to Amy Childers, PO Box 695, Florence, AL 35631.
- Donate through PayPal by emailing CureEBbabies@Yahoo.com
- Get more information about Easton and epidermolysis bullosa or donate to research by going to the Support Baby Easton page on Facebook, ebkids.org, thebutterflyfund.org.